LONDON – Hannah Jones, 13, is not afraid of dying — she is afraid of spending her remaining days in a hospital bed.
In a case that raises a host of medical and ethical issues, the British teenager from a small town northwest of London has won a battle to refuse a heart transplant operation.
That decision by British medical authorities has ignited a debate over whether children should have the right to refuse potentially lifesaving medical treatments or if health authorities have an obligation to intervene.
Hannah, from Marden, 145 miles from London, was diagnosed with leukemia at age 4. Doctors later found a heart defect. In eight years, she has had chemotherapy and nearly a dozen operations.
"I've been in hospital too much — I've had too much trauma," she told Sky News on Tuesday.
Hannah's story surfaced when her parents complained about medical officials who threatened to force her into a hospital.
"They phoned us on a Friday evening and said that if we didn't take her in they'd come and take her. We still refused to take her," said her mother, Kirsty Jones.
A social worker was then sent to interview the teenager about her refusal to have a heart transplant to treat her cardiomyopathy, a serious disease where the heart muscle becomes swollen and sometimes fails. The social worker backed Hannah's decision.
Hospital officials said it is standard procedure to make sure both the child and the parents understand the consequences of any decision.
"Clearly the welfare of the child is paramount," said Sally Stucke, a pediatrician with the Herefordshire Primary Care Trust where Hannah was receiving treatment. "Pediatricians will always consider the child's best interests at all times and this would include the child's medical, emotional and psychological well-being."
"No one can be forced to have a heart transplant," she said.
In Britain, children younger than 16 aren't automatically considered legally competent to make decisions about their health care. Still, British courts have said that a child's decision can be valid if they have "sufficient understanding and intelligence to enable him or her to understand fully what is proposed."
According to the Department of Health, when a child is considered competent and refuses treatment, their decision will be respected. When a consensus can't be reached, the patient can be overruled by either parents or guardians, or in more unusual circumstances, by the courts.
Dr. Tony Calland, who chairs the British Medical Association's medical ethics committee, told BBC radio that a 13-year-old like Hannah, supported by her parents, should be "perfectly capable" of making such a decision.
"Decisions to refuse life-prolonging treatment are always extremely difficult and emotive," he said. "What is paramount is that decisions are made in the best interests of the patient."
Heart transplants are risky operations for any patient. Transplants often require patients to be on lifelong anti-rejection medication to prevent their body from attacking their new heart. The medicines sometimes have side-effects, which make the body more susceptible to dangerous infections.
"I just decided there were too many risks, and even if I took it there might be a bad outcome," Hannah said. "There is a chance that I may be OK, and there's a chance that I may not be as well as I could be, but I'm willing to take that chance."
In the United States, the issue of refusing treatment is generally decided on a case-by-case basis, said Dr. Jerrold Eichner, chair of the American Academy of Pediatrics committee on hospital care.
He said the ideal was when a child, their parents and their doctors agreed as to how to proceed. Disagreements can be handled by hospital ethics committees or, in extreme situations, by the courts — though Eichner said that was rare.
In Switzerland, anyone deemed to have the "power of judgment" can decide whether to receive treatment or not, and there is no formal minimum age. If parents contest their child's decision, then the minor can go before the state guardianship authority to ask for a ruling.
Michelle Salathe of the Swiss Academy of Medical Sciences said it was inconceivable that a doctor would force a child to undergo a heart transplant against the wishes of both the patient and the parents.
In Austria, children under 14 are not allowed to refuse medical care, but 14- to 18-year-olds can. And under Greek law, parents have the final say on medical treatment until their child turns 18.